CT scan - some thickening of proximal duodenum?

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I hope this new turn pans out Niks!! Were both the GI's seeing J for the first time? I hope one of them has a dogged determination to find out what's wrong with her!!!
 
DustyKat said:
When did she have the bloods done?

Do you have the results?

Dusty. xxx
Click to expand...

She had them done yesterday Dusty, so haven't got them back yet.

Dex, she's seen them both before, but not together!

She is a little worried as now bleeding dark purple blood. She called GI secretary, she called back and said not to worry unless it's lots.

The tablets making her go well though!!
 
I hope the wait isn't too long Niks! We get our results the next day, same day if their is a major issue. Good luck!

Good to hear the tablets are working! :)

Dusty. xxx
 
Niks said:
She is a little worried as now bleeding dark purple blood. She called GI secretary, she called back and said not to worry unless it's lots.
Click to expand...

If she hadn't been going through hell for the last damn near a year now, I'd maybe be able to not worry for a day or two!! Do these GI's know what their secretaries are telling their patients??
 
Dex - she spoke to her GI! Will keep and eye on it though, because it is not right!! :ymad:

Dusty - if in hospital we get results straight away, but if done as out patient can take ages! I am a bit confused as to where to get results from. Her surgery don't have them. They were requested by Oxford and done in Swindon! :confused2:

Will get her to call Oxford on Monday if she hasn't heard from anyone!
 
I'm not sure how things work there Niks but here it is pretty rare that bloods done as an outpatient aren't sent or copied to the GP but I know your system can be difficult because of the trusts??

I would contact the office of the doctor that ordered them.

Good luck!

Dusty. xxx
 
Niks said:
Dex - she spoke to her GI! Will keep and eye on it though, because it is not right!! :ymad:

Dusty - if in hospital we get results straight away, but if done as out patient can take ages! I am a bit confused as to where to get results from. Her surgery don't have them. They were requested by Oxford and done in Swindon! :confused2:

Will get her to call Oxford on Monday if she hasn't heard from anyone!
Click to expand...

For us the results go to the DR.who ordered them and they have them within a few days. But the Dr.s don't always get around to looking at them till they have time. They only call us if something is wrong. Otherwise we call them and ask. Our blood is naturally blue, it only turns red when it hits oxygen. Why hers is staying purple is beyond me. Let us know .:hug: Hang in there!
 
Our blood is red...deoxygenated blood being blue is a common misconception.

Oxygenated blood is bright red whilst deoxygenated is dark red in colour. I would hazard a guess and say what you are seeing is very dark red blood.

Dusty. xxx
 
Is there any chance the "purple blood" is actually food? I thought the same of A once and then realized it was actually undigested grapes.
 
yes it's just very dark. To me it looks more purple than red, Not bright red! It is definitely blood, she has some bleeding even without a BM :-/
 
I've had bleeding without a BM before too, it was quite horrible, but for me bright red!

They took it seriously when I was in A&E, but that was me going in saying "I have crohn's I'm in a lot of pain and bleeding"

I know its very different for you! :(

I'm so sorry, every time I come to this thread I'm hoping you say they have figured something out!! x
 
^^ that break through bleeding?

Did they ultrasound for endometriosis or Polycystic ovarian syndrome?
Both could cause a lot of havoc .

ENdo could help figure that one out
 
No. Definitely not menstrual. She has depo jab, and also hormone pill as she was getting constant breakthrough bleeding. Now nothing!! Initially she was sent down the gynae route, no cysts, no endometriosis . This was checked a couple of years back before gastro got involved.
 
Blood results in the uk get to the gp in one of 3 ways.

If the gp uses online requests at the local hospital he can get results on line and go onto the system to check if the hospital has requested some... The hospital requested ones don't automatically get sent on line only the ones the gp has requested.

When a patient is seen in clinic at hospital the consultant informs gp of results of bloods in clinic letter or as an additional letter if abnormal and they want gp to action.
 
The colour of the blood may give some clue as to where it is originating from Niks.

Since food has been ruled out as a cause it sounds as if the blood may be originating perhaps in the small bowel, on the lower end?? Not high enough in the small bowel for it to have turned black but not in the end of the small bowel or colon for it to be bright red.

Having said that transit times will have an affect on the appearance of the blood so may well muddy the waters. :(

Dusty. xxx
 
Afraid not quiet Theresa! Been in A&E all day. She woke up in such a state at 4am in absolute agony. She took Tramadol, Oramorph and Pethidine, with absolutely no relief.

Called GP, who basically panicked and sent her straight to hospital. She was in A&E for a good 3 hours in so much pain. Obs were all over the place. Heart and pulse ranged from 50 - 140. BP really low. But bloods all good!

Finally saw GI, but she was feeling much better. He thinks that because it has been such a long time that her bowels haven't worked, that now she is going daily, with the new meds that it will take a while for her pain to settle down! He has advised to go on soft food and juicing. Will definitely try it!

They have not received Thyroid and B12 results from Swindon! He didn't re-do them as he doesn't think that the results of these will impact on her pain! Why are things so bloody complicated! GRRRR :ymad:
 
If he were an endocrinologist then maybe he can comment about the thyroid. As I said before it can slow the intestines to a halted ileus. So don't mess with the pituitary gland. He should stick to his specialty.
 
Niks

I'm hoping Maree. will see this and comment on thyroid conditions that she has researched. There are many thyroid conditions in our family. Maree has surgery on her thyroid when she was not much older than your girl.
 
I don't have a lot to what QueenGothel has had to say on Thyroid conditions definitely could be big part of the issue.

Hopefully the thyroid tests will come back positive.

My thoughts continue to be with you & Jamie, hope you find some answers soon.
 
She has pain, but always does! She is coping much better today, thank goodness, and is definitely going down the soft food route.

Her GP called her today saying her ferritin levels were low and he was going to prescribe iron. I do not know numbers! I went to get a copy of her results but they are not on system yet, the receptionist said he must have got it from the central medical site. He was not there when I got there!! Grrrr.. Really want to know numbers especially with thyroid and B12.
 
Thanks Niks for letting us know. Hope you get those no's. soon. Thyroid is very important. Have them check for hashimotos antibodies too. It can wreak havoc on you too. It is a thyroid disorder too.

Sorry this went offline when I sent this. So finished once back on.
 
Thanks Niks for letting us know. Hope you get those no's. soon. Thyroid is very important. Have them check for hashimotos antibodies too. It can wreak havoc on you too. It is a thyroid disorder too.:( Hope you soon get some good news.:hug:
 
I know that things haven't been great for Jaime, but I really do think (HOPE) that we are heading the right way. She has not vomited AT ALL for FIVE days!!! :dance:

This must mean her bowels are clearing out. Now just to sort out the rest!

:confused2::ybatty:
 
That's great for some good news! Hope things continue to get better! Be careful on the iron supplements as some can constipate. I know the Sytron liquid my son takes is supposed to be gentle and he has never got constipated on it.
 
Rather sad that we get excited when our children have vomit-free streaks, isn't it? I think we're going on six months here and couldn't be happier.

I hope she holds steady, Niks.
 
Niks said:
I know that things haven't been great for Jaime, but I really do think (HOPE) that we are heading the right way. She has not vomited AT ALL for FIVE days!!! :dance:

This must mean her bowels are clearing out. Now just to sort out the rest!

:confused2::ybatty:
Click to expand...

Yeah!!! :dance: Oh Niks... Praying for the sorting out!

:hug:
 
This is wonderful news and I must say thanks to God because I do believe in prayer and he is helping Jaime find the right answers. :hug:
 
Well her bowels certainly are so much better!

She feel so poorly though, no energy, literally wanting to sleep all the time. Feeling nauseous so appetite really low. Starting to lose weight again. Bleeding in stools much more regular.

Last night after all that time vomited, only once, but some little blood clots in vomit! :ybatty:

She fainted twice yesterday. She literally just goes out cold!
 
Can the gp get her a urgent referral to another specially. Eg not a GI as they are out of ideas.

She shouldn't be fainting so much.
 
Last edited:
Wow MLP, thank you! Plus the recommended new medication is Pruclaopride! It really does seem to be working too.

Finally have her blood results! Her B12 is okay. It is 262.

Thyroid TSH is within normal range at 1.0 (normal 0.35 - 6.9) Is this the only test they do? I can't see any others relating to Thyroid, so I guess there is nothing wrong with this after all.

Her Ferritin level was only 12 (normal 30-300) - She now has Iron supplement to sort this out, but hoping it won't constipate her more!

Catherine, I think maybe another specialist may be the way forward, but hopefully the Iron will help!

Mary - I would be going crazy if I was you, with all you guys are going through!!! xx
 
Niks,
If TSH is normal then the labs don't check t4, t3 as not necessary.
What iron is she on. Ferrous fumarate is the most GI friendly one.
Often docs prescribe ferrous sulphate 200mg twice to three times daily. If she struggles with that dose, either drop to once daily as it is better than none and will still work but a bit slower...or ask for ferrous fumarate.
Some cereals have loads of iron added as do some nutritional drinks, bread etc.
 
By the way. What does her GI say is the cause of the blood. I would want to tie him down and ask specifically why he thinks she is bleeding.
 
littlemissh said:
Niks,
If TSH is normal then the labs don't check t4, t3 as not necessary.
What iron is she on. Ferrous fumarate is the most GI friendly one.
Often docs prescribe ferrous sulphate 200mg twice to three times daily. If she struggles with that dose, either drop to once daily as it is better than none and will still work but a bit slower...or ask for ferrous fumarate.
Some cereals have loads of iron added as do some nutritional drinks, bread etc.
Click to expand...

Thank you! She has been given Ferromate 210mg x 2 daily. Hopefully it will pick her levels up, I am thinking her fainting episodes could be due to this!
 
Hi Niks
this article may be helpful to you regarding thyroid tests published by the British Thyroid Association
http://www.acb.org.uk/docs/tftguidelinefinal.pdf
Opinions differ with regard to the tests required and can vary according to country.
I have Hashimotos and annual testing with all three....TSH T3and T4. These tests are usually done for initial diagnosis here. (Ontario) as well as follow up.
My initial diagnosis was made by an endocrinologist and all tests were done .
Hope this will be helpful to you.
Hugs and best wishes
Trysha
 
Last edited:
A low ferritin in itself is less likely to cause fainting unless it has been low for a while and caused a low hb. I run an Hb of 7-9 and my ferritin is 7 at the moment and I do not feel faint if my hb is above 8-9, though I have got used to it I think. When my hb gets below 7 I do get very lightheaded though.
In Jaime it may be a combination of pain, low BP, malnutrition and low BMI and if her hb is low then that as well. A perfect storm as the phrase goes.

Reg the bleeding,That is not an unreasonable suggestion, particularly with a normal calprotectin- though would expect fairly bright red blood if this was the case. Though if she is constipated and she has an internal anal tear then it may be in the rectum for a while, hence the darker colour.
I bleed from the small bowel and it is very obviously black, no mistaking it...yuk.
 
Niks,
I wish I had something wonderfully helpful to insert here. Just know that I am checking on you and Jamie daily and praying for relief for you both.

Seems to me that blood from tearing and straining wouldn't go on and on like this. Has the doc explained why he hasn't done a colonoscopy to verify his dx? If he is correct, it would be easy enough to confirm with a scope.

Cheryl
 
Will comment on the the Thyroid test results too, but I'm stretching my memory here as I've not had a thyroid problem for 20 yrs (since a partial thyroidectomy).

I've always had all 3 thyroid tests run too. I was constantly sick in my teens with no clear cause was labelled Chronic Fatigue Syndrome (another horrible catch all like IBS). I had lots of thyroid tests run as their is a very strong history of thyroid disease in out family. The results we're always normal on TSH but sometimes outside normal range on other numbers) but so inconsistent that it didn't get to the diagnosis point. In my early 20s I developed swelling & pain in the thyroid gland, after a series of scans it became clear that one side of the thyroid had a large cyst in it and fluctuating hormone production, and the other side was constantly playing catch up to try and compensate. Removal of the faulty part of the gland made a huge difference to my general health and fixed my exhaustion issues.

I'm not saying your daughter has a thyroid condition, just cautioning about ruling out thyroid completely. If Jamie's health problem continue & she remains without a clear diagnosis, I'd push to have thyroid retested periodically and preferably get full panel done not just TSH. Also, if she has or develops pain or swellling in Thyroid area I'd push for scans of the gland even if the test numbers are normal.

I agree with a couple of other poster who suggested trying to see a different sort of specialist (non GI). I think a totally fresh perspective from a different angle might be what you need. I think the recent fainting offers you an opportunity to lobby for that.
 
Thanks everyone. I think with her fainting we need to look at another specialist too.

Dex - No, but they say she could have a small tear in her stomach due to vomiting!

xx
 
It would be extremely rare to have hypothyroidism and a normal TSH. This only happens in people with hypothalamic pituitary issues. The pituitary senses when there is not enough thyroid hormone and makes more TSH to stimulate the thyroid to work harder; that is why an elevated TSH is the test used to detect hypothyroidism. The actual thyroid hormones levels are affected by protein binding, so you can sometimes have abnl results of t4 and t3 but really be completely euthyroid. (I know what I'm talking as I am a former pediatric endocrinologist.) In malnourished people T4 and T3 can be low but it can be harmful to treat because it is the body's natural way of coping with malnutrition or sig. illness.

Yes I would definitely pursue a cause for the fainting as she certainly could injure herself when she falls- Do I remember correctly that this already happened to her?

(((HUGS)))
 
:ghug::ghug::ghug::ghug: Thinking of you Niks.

Is she able to keep up her fluid load through all this Niks?

Dusty. xxx
 
MLP - she hasn't seen any other specialist, apart from gynae when she was 15-17.

She drinks plenty Dusty and now she isn't vomiting everyday she is at least hydrated.

xx
 
Niks,
I was just thinking is there any correlation between when she vomits and when she faints? Meaning does she vomit and then faint? If yes she could be having a vasovagal response. Like the others said though she needs to see a neurologist and cardiologist ASAP and I would think possibly about an endocrinologist as well.
This is a very interesting article on syncope (fainting):

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC506859/
 
Only sometimes Kim. She can also faint without vomiting.

She is going to see GP tomorrow to see if she can be referred to someone about the fainting. It really worries me as she drives :eek2:
 
Niks said:
Only sometimes Kim. She can also faint without vomiting.

She is going to see GP tomorrow to see if she can be referred to someone about the fainting. It really worries me as she drives :eek2:
Click to expand...

I think it could be from lack of certain nutrition or potassium or something like that. Or low blood pressure. Or even certain meds can cause it.:(
 
Hello Niks
Sometimes severe abdominal pain can cause fainting.
Towards the end of a colonoscopy my blood pressure dropped to 80/45 and oxygen was administered. I felt a lot of pain.
I did not really know what was happening ---being sedated---but was very aware of the oxygen being given.
The GI said it was a vasovagal syncope due to a manoeuvre he had made.
A few months later due to recurring symptoms my GP ordered full work up with extensive cardiological testing and a referral to a cardiologist.
A treadmill stress test was done and also a tilt table test.
It showed vasovagal syncope. As advised by the cardiologist
I have a measure of control by fist clenching to ward off an attack.
Does not happen very often
Two weeks ago I had surgery to deal with a bladder tumour, will soon know results of biopsy.
In the post surgical recovery unit I had fierce abdominal pain in all the crohn's areas., it was quite unbearable and I wanted to die........literally.
They could not figure why this happened because dilaudid (di hydromorphine) had been given to stop pain.
It certainly did not work for this pain, seemed to increase it... and the nurses reported vasovagal syncope.
When I regained consciousness they had turned up the oxygen---hissing away......
I explained the pain was intolerable and that made me faint, never knew that could happen when already lying down!.The recovery staff said it was a vasovagal attack.
Some of the literature refers to morphine and codeine actually causing abdominal pain, so I intend to discuss this with the GI.
He never gives anything for pain.
It was prescribed by the urology team.Will be talking to them as well.
The surgery itself was a breeze but it activated the crohn's.......lucky me!
Hope this may be helpful to you to know.
There are articles on the web regarding this type of analgesia causing pain.
Poor Jaime...wishing her well.
Hugs

Trysha
 
Hi Trysha, thank you! I hope you are feeling much better now?

I do think that some of her fainting is due to pain. Sometimes it is standing up, even though she is really careful to stand up slowly and when she has a BM she feels dreadful, so much pain and often can pass out on the toilet!

I have written to her GP and cc'd her Doctors in Oxford .
explaining what is going on and asking if he can refer to another specialist.

Although her B12 was normal am a little worried as she had the loading doses earlier in the year and her levels seems to be dropping pretty quickly.
 
Okay. Have a massive dilemma!

Jaime had a really bad night. So much bleeding and very loose watery stools, lots of pain and she fainted twice.

Went to GP this morning. He said inflammation and prescribed 30mg prednisolone! She is scared to take it because GI hasn't prescribed. She called and left a message with Secretary and no reply. I e-mailed and no reply! So bloody frustrating!!?? What do you all think?

I think if she takes it and it clears up inflammation (if it is inflammation) then Oxford will not think it was there in the first place. If she doesn't take it she could end up even worse! GRRRRRR

On a better note, GP has made an appointment with me on Thursday to discuss letter regarding referring her to another specialist!!! At least he is going to talk to me and listen to what's going on properly.
 
Niks said:
Okay. Have a massive dilemma!

Jaime had a really bad night. So much bleeding and very loose watery stools, lots of pain and she fainted twice.

Went to GP this morning. He said inflammation and prescribed 30mg prednisolone! She is scared to take it because GI hasn't prescribed. She called and left a message with Secretary and no reply. I e-mailed and no reply! So bloody frustrating!!?? What do you all think?

I think if she takes it and it clears up inflammation (if it is inflammation) then Oxford will not think it was there in the first place. If she doesn't take it she could end up even worse! GRRRRRR

On a better note, GP has made an appointment with me on Thursday to discuss letter regarding referring her to another specialist!!! At least he is going to talk to me and listen to what's going on properly.
Click to expand...

It couldn't hurt to try it and see if it helps, right? I mean this would verify that something is wrong too! Keep us posted and hugs to poor Jaime!!!:hug:
 
The trouble is it worked before and then when they scoped her and couldn't find inflammation after the first time and being on Pred, they assumed that there wasn't any!
 
Niks said:
The trouble is it worked before and then when they scoped her and couldn't find inflammation after the first time and being on Pred, they assumed that there wasn't any!
Click to expand...

Maybe it was higher up where the scope doesn't reach. Did they ever think of that. I have two words for those idiots, pill cam!:ylol2:
 
Niks,
That is such a hard call. I am really not sure what the best plan of action is. But I do agree that the GI needs to make this call. Good luck and keep us posted!
 
I think I'll keep calling tomorrow until I get to talk to someone. Was at work today! Otherwise will ask GP to call.
 
l hate it when they don't call back...:voodoo::voodoo::voodoo:

I think its up to the GI ....but if she gets worse overnight l'd take her to the hospital.
I know you haven't had much luck there but at least they can keep an eye on her.

Poor girl she really needs a break..:ghug:
 
Niks can you get bloods test done before she starts taking it. You need at least the markers done for inflammation, also if possible any other bloods tests your new specialist is likely to want.
 
I just don't understand how they can overlook all the blood! If she just complained of some niggling pain and they couldn't find an answer, it'd be one thing, but this girl bleeds and vomits and passes out!! I can't believe this is still going on!!
 
Spoke to GI in Oxford this morning, he is ringing GP, wants bloods done and possibly Sigmoidoscopy, but needs to talk to other GI involved.

Doesn't want her to start steroids. Also doesn't want her to take iron supplements, will arrange an iron infusion instead. (He hadn't received blood results from Swindon!)

He agrees she needs referring urgently to another specialist regarding her fainting episodes.

He is absolutely convinced there is no inflammation! He is sure that it is down to previous constipation.

I don't think they'll find anything in bloodwork or sigmoioscopy as they never have before! The only time any inflammation was seen was initially on colonoscopy before any steroids given. 'SIGH'
 
Hi niks
I'm just wondering does Jamie have probs
With her blood pressure cos that cause
Her to faint.
Also has she ever seen a heart doctor?
Cos when you have a problem with heart
Rate it can cause fainting problems.
Just trying to help I'm sure this isn't
Case but its worth checking .
 
Her BP is often very low and they have had to take it manually before because it is too low to read on the normal machine.

When she was on a machine in A&E a couple of weekends back her heart rate was really irregular, even though she was just lying there! We are meeting with her GP about the letter I wrote about concerns, so hopefully will get another referral.

Secretary has called J back and requested bloods - again! And making her appointment for Gastro Clinic next Tuesday. She has said Doctor will call her too, we are still waiting!
 
I have probs with my heart rate and blood pressure
And this causes me to faint/ pass out/ collapse
Ect. It might be worth asking to have a heart
Doctor to check her out and then u can tick
Off the list. Maybe it might be two different
Causes for all this has anyone mentioned about
This. I do hope u get sorted x
 
MLS - maybe pointing this way. I just think after so long of being so poorly, everything is under a lot of stress. But yes I will push for her to see Cardio first I think. Thank you!

Are the causes of your heart and BP problems related to your other health issues?
 
The heart and the blood pressure are
Related, but as far as I know they didn't
Cause the cancer but the cancer has put
Pressure on my body and bp.
What happens with me is I have fast
Heart rate which causes bad bp and then
I pass out . If I was you I would get them to
Do cardio.
Niks there are some tests to check if
She is fairing cos if bp or heart rate
First one is tilt test which checks to see if
You pass out due to your blood pressure
Dropping. Also 24 hr bp monitoring which
Takes your bp every 15 mins with
Bp monitor on for 24hr and also they
Can put a heart monitor for the same
And will take 24 hr monitor of heart.
It's worth asking for theses tests.
Hope this helps Hun.
If there is anything else I can do just ask.
 
Johnny got checked for a prolonged QT. Fainting is one of the main symptoms. The cardiologist who checked him out said fainting can be nothing but should always be checked out.

Hope it ends up being nothing. (((Hugs))))
 
Bless u , its a right dilemma u want ur girl right and pain free but still want to get to t bottom of it , but if I am honest nhs don't seam to want to diagnose early problems just fix the emergencies , so I would get ur girl well and document all this n take it to solicitor for medical malpractice ? ? Xx god bless u its hard going through this but to watch ur baby go through it my heart is with u x
 
On an ECG-electrocardiogram (heart trace), the pattern follows a PQRST pattern, looking at the electrical activity as it goes through the heart causing the heart to contact at the right times in the right place.
First is the P wave, then QRS wave, then T wave. A prolonged QT is the distance (from which you can work out the time) between the beginning of the q wave to the T wave.
 
Well done littlemissh!!!

Johhny had one show up on an EKG in the ER once. We had to see a cardiologist, but he checked out fine.

There is a warning with anti-nausea meds like zofran that it can cause a prolonged QT. If you google it, you might see if it fits Jamie or not. Our GI said some antibiotics with the zofran can make it worse. I believe it is just a side effect and will stop once you discontinue the drug but the prolong QT itself is very dangerous.

Sorry NIks, I know we are all grasping at straws to try and help you figure this out for Jaime. Maybe something will stick and she can start feeling better. ((((Hugs)))))
 
Thanks Johnnysmom. Have been doing loads of research. With her Gastro problems I think if it isn't inflammatory it could be EGID. I am not sure if she has had biopsies but will definitely be checking with Gastro next week!
 
I think irregular heart rate could be linked to fainting??

My sister has irregular heart rate which was picked up after she felt faint at work (at a hospital). But we have never taken this up with another doctor to know if it is linked to her other symptoms which are dizziness and fainting.
 
I've spent hours this evening reading through every single post in this thread. My god, she has been through a lot. She sounds a hell of a lot stronger than I would be!My thoughts are with you both and I hope you find some answers soon.

Have you looked into postural tachycardia syndrome as a cause for the fainting? I had it as a result of a (non-gi) medicine, but before they knew the cause, the cardiologist talked about the autonomic nervous system possibly being a little out of sync. I have a CFS diagnosis and he was willing to put that down as a cause, so I could certainly understand a period of prolonged ill-health causing problems in that respect..

It's super easy to test at home, simply take the resting pulse (after lying down for at least 5 mins) and then get her to stand up and see how much it rises over the next 5 mins. Mine was shooting up to 150 within a minute of standing!. I think a rise of over 30 beats or over 120 is considered a sign of POTS. Please look into it!
 
Hi Nik - just checking if Jamie's blood amylase or lipase levels have been tested? Mostly likely have as it is a pretty standard test for pancreatitis.
 

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